Day +755  (2 years and 25 days):

Hello to team QManStrong! Hoping this entry finds you enjoying the beauty of Spring/Summer.  Here in the NW, it seems as though the sun got off to a late start.  But, we sure appreciated it when did finally make an appearance.  It’s been awhile since the last update on Quinn’s progress (since July I believe).  We had shared the wonderful news of his one-year post transplant biopsy results.  I realize I haven’t been good about quick updates along our journey.   We’ve been busy just living.  And, short windedness isn’t my forte.  It’s hard for me to summarize in few words what has been such a scary, surreal, and miraculous event in our lives.  So now that I am posting an entry, please excuse me as it may be a bit lengthy (eh-ehmm….VERY lengthy).

For anyone wanting the shortened version, he’s doing great! He’s nearly completely immersed in normal teenage life. All scans and tests have come back good!  Blood numbers almost all in or just below normal range.   He completed  his last week of his sophomore year of school last week!

For the longer version, please continue reading and prepare for a mini novel…lol!

I’ll start by saying two Fridays before last, May 26th, was a BIG DAY!  We celebrated 2 years since Quinn’s Transplant!!  Being that it was a holiday/3 day weekend, we decided to take a trip to the beach and stay for a few nights. We stayed not far from Quinn’s grandpa Denny and invited him to join us Friday at a tasty sushi restaurant nearby to celebrate. Quinn loves sushi. It was a special evening with family.  This day will always hold meaning to us.  It is also a time when a plethora of emotions (good and not so good) seem to surface.  

Physically, Quinn is doing good.  He is recovering as absolutely best as he can given his past plight.  It is SINCERELY AMAZING!!  He’s been able to join in on school sports this year if that says anything.  I honestly didn’t see that coming so quickly!  This has partially proven wrong my concerns about his strength and endurance not being up to par.  I still don’t think those things are back to 100%.  But, he’s farther along than dad and I would have imagined.   And he has shown steady signs of improvement throughout the year. When you compare fall football to winter rec basketball, you even notice a difference!

Fall football, at the time, felt like a bit of a stretch.  I was really concerned Quinn‘s expectations of his physical abilities were a little high which may have led him to disappointment.  His dreams of playing football had carried him through a lot of his treatments while battling cancer.  He still has a signed football helmet in his bedroom that we took with us to the hospital every time he was admitted. It gave him much strength.   He absolutely loves the sport.  He obsesses over Madden.  He enjoyed his years of flag football, one year of tackle, and a lot of seven on seven with friends on the side.  He truly loved the support and “swag” he received from the Cavs football team when he was about to undergo his transplant. But, Quinn’s love of the game was put to the test this year.  And, it may have been a bit harder than he had anticipated.

Dad and Quinn had managed to develop a relationship with the lead coach of the high school football team much earlier than the season’s start.  He was well aware of Quinn’s history, and seemed very warm and welcoming to the football family.  During various practices when Quinn’s energy was low, he had Quinn on the side, helping in other ways.  Not long into the season and after integrating himself in practices more; however, Quinn began wondering if it was a good fit for him. He was tempted to quit on multiple occasions.  I think the high school team took it to a level he wasn’t prepared for.  In his words he felt they took it way too serious.  It was tough physically and mentally.  This was at a time when just re-acclimating to school was a feat.  And, he was comparing himself to his peers and feeling deficient. He felt pressure when all eyes were watching him and felt some of the coaches were a bit harsh at times. I truly believe he was doing his best.  I realize Coach Hazel knew of Quinn’s history but, it occurred to us after the fact that some of the other coaches may not have been made aware. I know Quinn wanted to be held to the same standard as every other peer his age for the most part.  But, he also wanted more encouragement and perhaps just a little understanding as well.   I got a sense that some of the coaches spent a great deal of time degrading the players to see just how bad they wanted to play.  Quinn explained the fear of those moments.  Apparently, whenever he made a mistake, (I.e. didn’t make the right call or catch the ball, etc.) he experienced the “tear down.”  It didn’t seem to help motivate Quinn.  Especially when there wasn’t the “build back up” to follow.  There were many comments from other players as well asking things like “why do you get to sit out for practice when all of us are busting our butts?”  This particular comment came during daily doubles or “hell week” as they called it when temperatures were in the 90’s and 100’s all week.  

During game times, he mainly sat on the sidelines.  We weren’t expecting much play time.  Once in a while, he was put in a game for a short stent.  We loved it!  It made our hearts so HAPPY!!  Quinn may have not been at his best physically, but he was giving his all. I have no doubt about that.  

Here we are now, during spring/summer training, when the fall football team is already preparing for fall.  But, Quinn doesn’t think he’s going back out for the football team next fall.  Jake and myself had slightly hoped that he would pursue this further. This is only because we know how much he loves the sport. But, we also have to accept whatever path Quinn chooses.  The risk of putting his body in harms way is much less which is nice from a mom’s standpoint.  There was always a fear his bones would break easier.   I’m worried he’ll be fine with the decision until he goes to the first football game.  Or, when he sees his brother out there on the freshman team.  

We are grateful to Coach Hazel for allowing Quinn a spot on the team and his kindness.  We are so proud of Quinn for showing up, trying his best, and finishing out the season last fall. I sure hope he will be able to continue playing football in some form down the road.  

The basketball REC league, on the other hand, was a great idea because it was less serious and stressful and more focused  on fun!  It was a real blessing to watch him out there on the court keeping up with the rest of the team.  Some of these kids/friends have been on his previous teams for several years. I am sure it was pretty cool for them to see as well.

This school year has brought with it an excess of illnesses for the kids (and for everyone for that matter).  And, it would seem as though Quinn has caught most all of it.   He caught Covid in the fall.  Surprisingly, none of us in the same household caught it.  Also, his symptoms moved fairly quickly.  I credit the quick response to his Covid shot and boosters he had received prior.  He caught a regular virus shortly after.  He then caught Influenza A in December which was miserable for him.  The poor kid spent all of Christmas break and thereafter sick.  He got well for about a week afterwards and then caught RSV.  The symptoms lasted for a long  time.  The RSV ended up turning into Walking Pneumonia which was treated with an antibiotic.  At the end of Spring Break, he caught another virus which turned into conjunctivitis and an ear infection.  He needed antibiotics once more.  He has more recently (2 months) began to feel better from another 3 week illness.   It sure seems as though he has been sick more of the school year than not.  Not only has he caught a lot of illness, his recovery takes longer than average.  Even though illnesses were  rampant this year for many students, I can’t help but attribute Quinn’s excessive amount of illnesses and longer recovery times to some of the mild late effects associated with transplant and cancer treatments.

Quinn’s 504 plan through his school has been put to the test and proven beneficial for the most part.  Jake and I met with all of his teachers and his school counselor one morning at the beginning of the school year.  The goal was to briefly discuss his health history, check in with current health issues, and discuss what accommodations were needed for academic success.  They all seemed genuinely supportive and open to assisting as best possible.  With Quinn’s over abundance of illnesses thus far this year, it was good we discussed excusing frequent absences.    We also discussed lighter work load and exemptions during periods where Quinn may feel fatigue, weakness, or illness for extended periods .  He also has the ability to leave his classroom at any time if he feels sick or needs to go home.   Although there are accommodations in place, Quinn rarely wants to rely or fall back on them.  He has been most committed to proving he can “keep up” as a “normal” student.  

Amazingly, his grades have been all A’s and B’s.  We couldn’t be more proud.   We have been grateful that the numerous absences haven’t  been too much of an issue (his English class may be an exception because there is very pertinent discussion in class which helps with his grade quite substantially) .  And, most of the teachers have remained supportive. Quinn has also learned better communication with his teachers which may prove to be an important tool throughout life.

Speaking of school….this last February marked one year since he returned back to in-person school.  I suppose that’s considered another milestone worthy of celebration!  Being back has been a blessing and a relief in so many ways.  He has benefited immensely by learning in a classroom setting again.  He learns better when actively engaged in classroom discussions, able to talk to teachers in person, and having peers and staff that hold him accountable.   He has also had a consistent girlfriend whom he is still quite enamored with.   He has reconnected with some of his old friends over time and made some new.   He has developed a purpose outside of the hospital/cancer life he was entrenched in.  

Quinn and I were talking the other day on the way home about what school means to him now.  He says he has a different perspective on it because there was a time when he couldn’t go to school even when he wanted to.  He also said that the year off he had from school gave him a chance to “rest and reset.”  This created more meaning to his life goals and motivation to put them to action.  I thought it was a thoughtful and mature response.  Oh, he also said it’s so nice to be around his friends again.  Life for Quinn now is much closer to the normal trials and tribulations.   As most teens do, he’s also learning to balance his time, communicate, prioritize, and set boundaries.   I suppose he will always carry with him the reality of what he’s gone through in a way that very few, if any, of his peers will ever understand.  That’s what separates him apart from the rest.  As awful as the battle was for him and as much as I pray not to repeat where we were, I believe it was also a gift. I don’t think Quinn will ever take things for granted like some typical 16-year-olds might.

While returning to school has been a relief, he has had some challenges on the other hand.  The down side to school for him has been the insensitive comments from some of his peers.    A particular group of girls were just flat out making fun of him for any and everything imaginable for awhile.  He’s had comments made about his tall skinny body and how it makes him look like “a tampon.”  He’s been teased for his hair, told he looks like a clown, and worse of all…..made fun of for having cancer….. in front of a class full of his peers.  Luckily, a couple of his friends told the girl to “can it” and defended him.  He’s in a weightlifting class and not quite where he wants to be.  He says he doesn’t lift as heavy of weights as the rest of the class does yet.  That upsets him at times. Some of his lifting partners make comments with the other guys around about how they are “stuck with him and he can’t lift much.”  These are even from kids that I thought were his friends. Perhaps they are well-meaning friends that just don’t think before they speak.  I remind him that the real success is beating his own PR. Setting his own realistic and attainable goals should be his focus. Comparing himself to all the other kids after having traveled the path he has is like comparing apples to oranges.  

A couple of weeks ago, he told me he sat in the cafeteria and had french fries thrown at his head. This was all on the tails of having a very rough morning at school already that day.  He told me one day not too long ago that he didn’t want to go to school because he is made fun of quite often.  Don’t get me wrong, Quinn has some good friends that would have his back too.  But, the fact that he faces that from others at all is hard to swallow.  Sad but true that this behavior seems common these days.  I wish sometimes the kids knew the struggles that he’s had to overcome.  I wish I could protect him but unfortunately I can’t.  To an extent, I’m not doing him any favors by protecting him from the real world. Granted, I remind him that kids do grow up and mature, for the most part. It doesn’t help either that he tends to be a deep thinker and feeler type  much like his mom.  He’ll stew on the hurtful words for far too long.   There are times I would love nothing more than to face a couple of these individuals to put them in their place.  Or better yet, I’d like to have a chat with their parents.   I don’t think I’d be doing Quinn any favors in the long run, however.  It may even backfire.  The depth of insensitivity is unbelievable.  If only they had walked in his shoes, then they may feel shame for their actions.   But, I would never wish it on any of them.  And, I have little faith that taking this up with the school would result in any positive outcome.

Since his one year biopsy, he has been seeing his Oncologist, Dr. Richard back at Randall’s every two months.   It’s been nice to spread out the visits a bit more in this last year.  Before his one year biopsy, he was seeing her once a month.   Heck, I believe the first few months we had biweekly appointments!   He’s come a long way!!

Upon each visit, he still has his blood drawn and looked at.  His blood counts have been decent.  It is still rare to see all numbers within normal range.  I believe there is one month where his blood work came back with no flagged numbers.  With him having been sick so often as well, it explains why some numbers just hang below normal.  His hemoglobin and red blood cells seem to consistently be right below normal.  

After the bloodwork results and discussion are complete, conversations regarding general health and life begin.  Dr. Richard is always curious to hear how Quinn is and what he’s been up to.  Any concerns or questions us parents or Quinn have are addressed.  I often worry that Quinn’s excessive amount of illnesses and long recovery times might indicate something worse going on.  However, Dr. Richard reminds me that Quinn‘s immune system is new like that of an infant. When you send an infant off to daycare or preschool, they seem to catch everything known to man.  They haven’t yet developed the antibodies to fight. I’m glad she reminded me of this. Quinn’s antibodies build up each and every time he’s exposed. But, he did have to start over because of the new marrow/blood in his system.   And it may take a while…. just as it did when he was younger and being exposed to a lot for the first time.  

 A new social worker Joel stopped in on his last visit at Randall’s to introduce himself and check in with Quinn.  They will often stop to check in while we are there.  He briefed himself on Quinn’s medical history before he had come into the room.   I think even he was blown away by Quinn’s story.  They hit it off pretty instantly once they met.  Quinn seemed to really like him.  Joel wanted Quinn to summarize a bit of his story to him.   After Quinn’s summary, they both reflected on it a bit.   There was some back and forth and then Joel said to Quinn “you almost died a couple of times.”  Quinn’s wheels began turning.  You could see him grasping that as if it was for the first time.  It seems it was at that point that Quinn perhaps felt the reality of what he faced a bit deeper.   He was too busy surviving to process it in its entirety during the fight.  We all were.  And Jake and I worked hard at times to protect him from some of the harsh realities he could potentially face.   Needless to say, it was a very powerful conversation the two of them had.  It felt like a start.   We have since set up another session between the two outside of his regular clinic visits.  I am hoping the session is helpful to Quinn. If so, we may be setting up more of them.  We are always ready and willing to get Quinn the mental/emotional help he needs, but we also respect his pace at things.

Quinn has also officially completed his childhood vaccinations which we started about a year and a half ago.  We had to wait for him to be off all immune suppressants and for his blood counts to be much closer to normal.  He got his childhood vaccinations done back at his pediatricians office. He would go in on average of about every 2-3 months and get somewhere around 4-6 vaccinations at a time.  It began to wear on him.  And he finally asked me if he was just about done with all of them as he was nearing the last of them. I think when you have them as a baby it isn’t quite as traumatizing because you don’t have the awareness that a teen or adult might.  I may be wrong on that.  But, needless to say,  we are relieved it’s over for him. The less he has to be poked and prodded, the better.  After all, he seen enough of that.

And one more milestone… last Friday, Quinn and our family returned back up on the hill to see Dr. Chang at Doernbecher’s for his 2 year follow up appointment.  It’s amazing that it’s been two years. I’ve probably said this before but, in someways it feels like just yesterday.  It was a busy day with a series of scheduled appointments. It’s all part of the two-year post transplant “roadmap.”  Luckily, he did not have to have a bone marrow biopsy.   He started with a pulmonary lung function test and an echocardiogram to check his heart. We then had lunch and waited patiently to see Dr. Chang.  Finally, all of this was followed by an eye exam.

We were excited to Dr. Chang again!  It was wonderful to see him with Quinn’s health being on the other side of things.   Plus, Dr. Chang is a superhero to us and one of the coolest guys ever!!  The last time we saw Dr. Chang was Quinn’s one-year follow up.   On Friday, he drew blood to check his blood counts.  Thankfully, there were no red flags.   We conversed a bit.  He wanted to know if we had any questions  after giving a look at Quinn.

I asked him if they would be testing his ferritin levels to check for iron overload again.  He said that typically he does not test for that after the patient has tested normal with ferritin levels and the patient has not had any blood transfusions since.   Yahoo that Quinn has not!

We were also curious to know how often Quinn would be going in for clinic visits now that he’s made it past the 2 year mark.   Dr. Chang replied that he would be comfortable with every 3 to 4 months. But, we will also defer to Dr. Richard back at Randall’s to see what she prefers since she is still Quinn’s main Oncologist.   Sadly, Dr. Chang also told us that we would not be seeing him in another year. Apparently, since Quinn‘s primary oncologist was Dr. Richard to begin with, he will now hand over Quinn’s care solely to Dr. Richard.  So essentially, we won’t be seeing Dr. Chang again if all goes well.  He did remind us that Quinn’s survivorship clinic begins after three years up at Doernbecher’s.  So, I suppose, there’s a chance we’d be seeing Dr. Chang again afterall.  It’s a real crazy predicament. We want to see him again, but we don’t. In fact, we hope never to see him again.  But, he will always be one of the coolest guys ever known to our family🙏❤️.

I must say it was quite surreal to be there and not have a list a mile long of questions and concerns. I have always advocated hard for Quinn. It almost felt irresponsible to not come with the laundry list of questions. But, it’s also a blessing.

Quinn’s eye exam lasted the longest surprisingly.  They spent a bit of time dilating his eyes to have a closer look. Aside from needing the eye exams yearly as part of the roadmap, we’ve also been paying attention to some intermittent redness in his eyes that we wanted to have checked.  One very common form of GVHD is ocular GVHD.  This presents with symptoms such as ….dry, burning, gritty, or itchy eyes, orbital pain, difficulty opening eyes in the morning, sensitivity to light and wind, excessive tearing, and diminished visual acuity and/or blurring.  Unfortunately, GVHD can occur at any point post transplant. Clearly we are past the phase of any acute GVHD. If some were to come on now, we’d be dealing with a more chronic problem.

But, one must also consider seasonal allergies which may play a role.  The donor’s health history suggested he had pollen allergies.  One never knows whether this may have transferred over in his marrow to Quinn.  The Ophthalmologist ended up suspecting it was allergy related.  She suggested we use eye drops and antihistamines when symptoms present.  It’s hard, not taking it to the worst case scenario sometimes.  But neither Jake nor I could have imagined Quinn would have been diagnosed with leukemia either.

But he was.

Disclaimer:  I write as I process……

Im going to be real for a moment and talk about the less glorious realities to all of this.  Sometimes more than one feeling can exist at the same time. The tremendous gratitude from our blessings of Quinn‘s returned health is something we enjoy every day.  AND, sometimes we experience other feelings as well.  Cancer leaves a huge mess in its wake.   There are realities difficult to speak about, but still very real.  Most would just rather turn their heads.  Yet, I find that sitting with some of the unpleasant feelings when they pop up is how we move past it. Most people just don’t understand that.  So, sometimes it’s hard to find the right support. And, there are still demons that follow.  Fear is the main one……specifically, the fear of it returning.  It’s a very hard feeling to discuss with most people. People assume or expect that once the cancer has been beaten, the battle is over.  This isn’t entirely true.  It may not look the same but, there’s still a battle.  It comes in a different form.  Learning how to manage fear, PTSD, panic attacks, and general anxiety,  become the battle. Being able to handle the normal life stresses without having a negative and heightened response becomes the battle.   Training ourselves to relax enough to get a good night’s rest is a feat that feels impossible some nights!  The fight or flight response is a great one to have when fleeing a dangerous situation. But, it is detrimental to one’s health if it sticks around for the long term. This is one particular battle that Jake and I have to work hard at often.  Observing “seemingly” abnormal behaviors from Quinn can trigger some of those feelings.  But, it’s important to distinguish between what is normal and abnormal first.  I believe the fear to be a knee jerk reaction now.   We forget to make that distinction sometimes.  We now have to re-train our brains to quit automatically going to the traumatic stress response.  Fear can take over if you let it.   If Quinn takes a nap or seems extra tired after school, fear and anxiety come in.  If he is not hungry during a meal or has problems recovering from an illness, fear and anxiety come in.   If he ever experiences any pain or soreness in any of his bones, muscles, or joints, fear comes in .  It’s hard not to worry about or even fear the worst case scenario each time these things happen. But, we are learning day by day that many of these behaviors can be typical of anyone from time to time.  It’s just really tough distinguishing the difference.  Also, once your brain or body knows trauma, it’s hard to prevent that response during tough situations.

As far as the fear we carry with us, I thought I might include part of an article that uses the analogy of a “loaded gun” to explain it.   I believe this can hold true for the cancer survivors and their loved ones too…..

“Imagine you're going about your day, minding your own business, when someone sneaks up behind you. You feel something press up against the back of your head, as someone whispers in your ear.

“Sssshhhhh—don't turn around. Just listen. I am holding a gun against the back of your head. I'm going to keep it there. I'm going to follow you around like this every day, for the rest of your life.

"I'm going to press a bit harder, every so often, just to remind you I'm here, but you need to try your best to ignore me, to move on with your life.  Act like I'm not here, but don't you ever forget—one day I may just pull the trigger—or maybe I won't. Isn't this going to be a fun game?"  

THIS is what it is like to be diagnosed with cancer. Any STAGE of cancer. Any KIND of cancer.

Remission does not change the constant fear. It never truly goes away. It's always in the back of your mind.”

Here is the article link:

https://www.hopeafterbreastcancer.com/blog/this-is-what-it-s-like-to-be-diagnosed-with-cancer

So, it makes sense why fear is a battle we constantly fight.  After all, he was diagnosed with a “very high risk”type of leukemia.  It’s still hard for me to believe that my son was a very high risk case, let alone, that he was diagnosed with leukemia at all.  His was ferociously resistant to treatment.  Very high risk also means high risk of it returning.   I hear the relapse stories play out time and time again on my Facebook momcology and other cancer related groups.   Most days I don’t tune in because I want to experience our happy outcome and focus on each day and all the blessings.  Yet, there are other times when I tune in to joyful and inspiring stories too.  And I try to provide hope to others that are walking this path currently. We are praying and hopeful that the transplant changed everything including the risk of relapse for Quinn!!  

In this club we never signed up for, I have come to know several children in the position of Quinn’s whom have suffered horribly and/or tragically from the disease and/or its treatments.  I suppose knowing these realities exist also feeds the fear.  I am heartbroken by those many fighters whom have suffered, or worse, whom are no longer with us💔.   I’ll probably spend my life trying to understand why some children are lucky and some are not.

In the meantime, I’ll be working to be the best parent I can for Q (and of course his amazing brother too).  I’ll continue spending my time not taking for granted this second chance.  Tomorrow is not promised.  

Cancer affects so many more elements to life than one might imagine. I have been seeing a therapist every 2 weeks for the last year trying to deal with it all. I heard a statistic that 80% of marriages fail when a child has been diagnosed and had to battle cancer. I believe it.  There was a point where Jake and I were barely holding on. We’ve had to fight hard to stay in this.  Thank God we are standing where we are today.  It’s also become knowledge that the stress on a parent having gone through this can cause many health issues.  Auto immune diseases run rampant!  Since the beginning of this whole traumatic event, I have been addressing personal health issues a bit.  

I often think long and hard about ways we can provide a healthy life for Quinn. One observation I’ve had about Quinn is how much better he seems when he has an emotional outlet to vent and sort out his stress.  Teenage life can be hard.  He has become much more open about his daily stresses with me confiding in me with a lot of things. I truly believe that his emotional outlet is key to his continued health. Mental and emotional stress can cause disease I think!  When he first had the diagnosis of leukemia, he was under a great deal of stress because of Covid, no school, social isolation, and perhaps a less than ideal diet.  Are these what contributed to his leukemia?  I can’t say for certain.  We will never really know the cause/causes.  Genetics, lifestyle choices, environmental stressors, and stress could have all played a role.   In my heart, I believe that he internalized and battled a lot of his feelings quietly.  He has always been an over thinker and a people pleaser.  As I stated earlier, he seems to be a highly sensitive and perceptive person, absorbing the feelings of those around him.  Yet, always afraid to speak up and speak his truth.  While others all around him aren’t afraid to speak, this left him little room.  I now choose to always be there  and be someone he can talk to you about anything.  His dad too.  As he is now entering into young adulthood, I’ve enjoyed becoming closer with him.  I’ve learned how to listen and not interject my judgements or feelings.  Sometimes people just simply NEED to feel heard...to know their feelings are okay to have.  He’s an amazing kid.  It’s amazing how much we can learn from our kids if we are open too❤️.  

Continuing on a lighter note…..some additional great events have taken place this year.  In October, we raised money and awareness for the Leukemia and Lymphoma Society’s “Light the Night” event.   Several of our closest family and friends joined us on a walk and celebration of Quinn and the other survivors.  We also honored the fighters and those no longer with us.  It was a very powerful experience.  Quinn got to go up and be a part of the survivor’s circle.  Thank God.  Our overall impact was $2,558.72.  The generosity we received via donations was awesome and amazing.  Thankful for those friends and family🙏.  We are hoping to do the fundraiser again this year, and increase our impact even more.

Also in October,  I placed a call to Allison (Quinn’s Transplant Coordinator) at Doernbecher’s to check back in about Quinn’s donor being contacted.  I had sent a letter to the donor shortly before Quinn’s transplant. It seemed important I thank him and explain a bit of what led us to that point.  I figured after the one year mark that the donor was probably not interested and didn’t want to be contacted. They had warned us this might happen early on.  However, I am glad I checked in again.  Allison said she would look into it once again and get back to me. A few days later we received the most amazing news. Apparently, the donor was interested in being contacted if/when we ever wanted to!!!  We were given his email, phone number, name, and address.   I immediately called Jake and my parents to share the news!  The feeling I got when saying his name brought me to tears.  Being able to put a name to this incredibly selfless  heroic person was very meaningful.

However, I sat on this information quite a long time. I tend to do that when I decide that any word or deed I could possibly say or do just wouldn’t seem enough to truly thank him.  After all, he gave us our son.  How can “thank you” feel adequate?  We might tell people thank you for holding the door for us.  We might say thank you when our delivery arrives at our door. Thank you seems appropriate when someone schedules us for an appointment, fills up our gas tank, or calls to check in on us.  But, the thank you I am talking about far surpasses that. ❤️

After several months of hemming and hawing over it, I decided thank you was better than nothing.  And it was certainly a good place to start.  I also think there would’ve been a great deal of regret if I let too much time pass to reach out or didn’t do anything at all.  So, about a week ago, I randomly sent a text message to him that said…..

“Hello Kyle.  You don't know me but my name is Kellie O'Shaughnessy and you saved my 16 year old son Quinn's life.  I don't know how to thank you enough.❤️”

This was sent with a current picture of Quinn.

He then replied back quicker than I’d expected….

“Hey there Kellie! I'm so happy you've texted. I've been meaning to write out a nice letter to respond back to your heartfelt letter you sent way back when, but between my lack of knowing what to say and life itself, I've gotten a little behind but I honestly think of Quinn often. I know there is so much that we don't know about each other given the anonymous donation, but as fate would have it my father had leukemia as well and an anonymous donation saved his life, so much so that he gets to hang out with my 14 month old, who is also named Quinn! I would never wish that diagnosis on anyone but I truly am happy to pass on this amazing miracle that can change lives.

Hope we can speak more in the future. ❤️”

I was speechless.

The most happy and grateful tears began to fall.  I could not believe what I was reading. The story he told me was so touching. His own father suffered from the same disease?  That’s what prompted him to donate his own marrow?  And, his very own son is named Quinn? Yes, that’s right. His 14 month old son is named Quinn.  And we know he never knew what my Quinn’s name was. It was all anonymous.  They’re just really aren’t words to explain the feelings I had at that moment.  It definitely felt like fate brought this miracle worker into our lives.

Quinn, of course, has been privy to all of this since I first received the donor’s contact information.  I asked him if he wanted to reach out but he wasn’t too sure. I had asked him several times.  He always got rather quiet when I did. I’m not sure why.  Perhaps facing his donor means facing a scary reality that he’s trying to get away from?  Or, perhaps he wouldn’t know really what to say.  Maybe it’s a combination of both.   I had the information hanging on the inside of one of our kitchen cabinet doors.    I also asked him the day I sent the text if it would be OK for me to do so. He said “yes…..absolutely.”  maybe he felt more comfortable because mom might know more what to say.   I read to Quinn the message that I wanted to send him. Quinn read it and said I should.

The donor shot back the message as Quinn was leaving out the door for school.  I showed Quinn and he got a big smile.  I sent Quinn his number if/when he ever wanted to reach out to him.  It would be lovely for them to one day meet.  He lives in North Carolina.  But, I will sit back and follow Quinn’s lead on that.  Every survivor handles the journey in different ways and handles the feelings differently.  I respect that. I can’t help but feel like God has big things in store someday for Q.  But,  if just living a long, healthy and normal life is where Quinn’s success truly lies, then we are 100% on board to support that too!  What an honor it would be!  

The donor also reached out on Quinn’s two year anniversary to say congratulations ❤️.   I have texted back and forth with him a bit.

Also this year, Quinn had a Make-A-Wish granted to him! A wish grantor/high school friend of mine reached out and wanted to do that for him.  After a lot of patience on her end, a lot of back-and-forth, and some paperwork, it started getting more real.  I thought it was very special that she thought of Quinn, and wanted to grant him a wish.  She had actually been trying to for a while, but when she initially reached out, we had just been told that Quinn‘s car T cell therapy had failed, and we would need to begin preparatory work for his transplant.  We were not in a good position to go ahead with any wish at that point. We didn’t even know what the future would be like because we had a long road ahead with no certainties.  Holly was so exceptionally patient.  She reached out again when Quinn was beginning to regain his health.  We went back-and-forth several months  trying to proceed forward.  However, our family was just trying to get through each day still at that point.  There was and still is lots to work through.  It was a time when simply “getting by” with the basics was a lot of work.  But,  she still hadn’t given up on us.    We finally had a zoom call with her last summer.  She asked Quinn that if he could have three wishes, what they would be. She didn’t hesitate to say, and, “THINK BIG!”  

Quinn gave her three different wishes that he would love.  His wishes were:

1) to go to a Portland Trail Blazers game, and meet with the players,

2) to go to a Philadelphia Eagles game and meet with the players, or

3) to go meet his favorite comedians, the Impractical Jokers at a live show (his favorite wish)

We received a bit of paperwork to fill out related to Quinn‘s medical needs, as well as, any travel accommodations etc. He also got asked —if he wanted to meet one of the Impractical Jokers, which one would it be and why.  Clearly at that point, we were suspecting THE WISH they were working on for Quinn was meeting the Jokers.  There was some consulting that took place with another rep from Make-A-Wish to The Jokers.  It took some time nailing down a date because we had to wait for them to be on tour again. Once their dates were set, Quinn needed to decide where on their tour he wanted to meet them.  He really wanted to see them in New York, his favorite “big city.” And, on a most exciting day, we got the news that Quinn‘s wish was granted!!  

The whole process was amazing from start to finish.  We rode in a limo to the airport where the check in staff gave Quinn a gift.  The pilot made a  Make-A-Wish announcement about him on the overhead.   When we arrived in New York, there was a driver waiting outside to escort us to the next stop.  Make-A-Wish had hotel accommodations ready for us, tickets to see the Impractical Jokers live, and free admission to the Rockefeller Center’s “Top of The Rock.”  They also provided us with a cash card to use on miscellaneous expenses. 

I think our family would all agree that meeting the Jokers backstage and watching them live was an experience of a lifetime!   Quinn had hoped to meet them but nothing was set in stone. Sal had come out from backstage and shook our hands which was AWESOME!  We were very pleasantly surprised when a gentleman escorted us to the back behind the stage in a special room where the Jokers stood.  There was another group chatting with them when we walked in.   Sal, one of the three Jokers, broke away from the group and came over to us and then the rest followed.  We spent a bit more time talking with them than I would have imagined. All three of them seemed very genuine and kind to us. Sal ended up in tears as we explained a bit of Quinn’s journey to get here. The whole thing was surreal.  I can’t say enough wonderful things about the Make-A-Wish foundation. They nailed every detail of our trip.  From travel and hotel accommodations, to extra spending money,  to an organized itinerary, and all the other details in between, it was all wonderful!  New York is an amazingly lively city.  Another one of Quinn’s favorite things to do was take in the sights, sounds, and ambiance of Times Square.  I think we managed to go there each night.  Avery, our other wonderful young man, enjoyed New York too!!  The memories made, thanks to Holly, will be memories to last a lifetime for all of us!

Side note:  Quinn also got his permit!!  he kept putting it off and didn’t seem interested. And then one night he disappeared into his room and spent two hours in there. He came downstairs and said “finished.”  He had finally decided to commit to read the drivers manual.  And that was that!  Now, onto his drivers license! He’s had a little drive time. We are working to get him in to drivers Ed sometime around the end of summer. We are hopeful he’ll have it by his next birthday. I’ve noticed a lot of kids holding off a bit with their licenses. But, Quinn is now starting to see his friends and girlfriend driving and I think that’s the thing that has motivated him the most. 

So, that’s the update and the end of my novel lol. In summary, this year has had lots of life and living.  We’ve made wonderful memories.  Quinn’s progress has been great!!  We are so so grateful 🙏🙏🥰🥰.  Thanks for reading this far if you have.  Thanks too for all the amazing support.  You all carried us through the worst of it and we’re so extremely grateful.  Hope you all enjoy the summer ahead.  Wishing you all the best.

Love to all ❤️.

#QManStrong